Nursing Leadership in Palliative Care: Challenges and Opportunities

In recognition of National Nurses Week and the 2.8 million RNs and 690,000 LPNs in the US, I want to call your attention to the potential for nurses to lead in improving palliative care by implementing the recommendations of the IOM Report on Dying in America. Nurses are an essential element of the healthcare team, at the forefront in caring for patients at all stages of health and illness, and in all settings of care.

Nurses are often the healthcare team members who know the patient best, caring for patients’ most intimate needs, supporting and listening when they are most vulnerable. Teaching the family members what’s happening to their loved one. Nurses spend significant amounts of time with patients: 8-12 hours per shift in the hospital, often multiple days in a row. In the outpatient settings, nurses work with patients over months or years in the clinic, in the home, over the phone, or online.

Nursing is the most trusted profession. So many patients or family members confide in us, telling us things that could make their quality of life or healthcare experience better, or more effective. Many of us have experienced our own end-of-life journeys, caring and advocating for our loved ones. Therefore, we are motivated to advocate for our patients and distressed when we see the patient and family suffer, especially when we tried to help, but failed.

Nurses are omnipresent in health care, often being the first clinician to assess a patient in crisis, or to understand the patient’s concerns. Universally, nurses feel that one of their most important roles is in being an advocate for the patient. Yet nurses often do not feel that they are on a level playing field with physicians. In some cases, the physician does not listen. In other cases, the physician forbids the nurse to talk with his or her patient about palliative care or hospice as an alternative to or to promote additional support with invasive testing, burdensome treatments, transplant or life-support measures. Here are two examples*:

• A 20-year-old is hospitalized for advanced heart failure, in CCU on a dobutamine drip. The VAD (ventricular assist device) /transplant team is working him up for VAD as a bridge to transplant. However, the heart failure (HF) nurses working with him in clinic express concerns that he is consistently missing medications and appointments, is binge drinking most weekends, and he will not let anybody help him with his healthcare needs. All are contraindications to VAD candidacy. However, the medical team proceeds with implantation, as they can’t say no with such a young patient. The patient dies 2 months later from septic shock caused by a drive line infection, leaving the HF nursing team with a feeling of overwhelming moral distress.
• A heart failure clinic nurse has worked with an 84-year-old patient for 3 years. Over the past 6 months she has seen increasing frailty, functional decline, frequent hospitalizations, diuretic resistance and intolerance to ACE inhibitors. She knows his prognosis is poor and wants to talk with the patient and his daughter about the option of DNR status and hospice, but she does not believe it is her role. However, when she talks with his cardiologist about her concerns and her recommendations, he won’t talk with them. The nurse is afraid of angering the cardiologist, so she does not push it. Her moral distress over the situation becomes more pronounced. One night the patient’s breathing suddenly becomes much worse and the daughter calls 911. He ends up in CCU. Three hours after admission, the patient goes into ventricular fibrillation. With CPR and ACLS he is resuscitated twice in 45 minutes. The intensivist calls the daughter, and gets a DNR order over the phone. While she is driving to the hospital, her father codes again, dying before she arrives.

The 2010 IOM Report the Future of Nursing: Leading Change, Advancing Health was a seminal report on the state and potential for nursing. Key messages from this report included that:

• “Nurses should practice to the full extent of their education and training.”
• “Nurses should be full partners, with physicians and other health care professionals, in redesigning health care in the United States.”

Quality care for those with chronic and serious illness is within our reach if we leverage the expertise and numbers in nursing, and consider the changes needed, based on the IOM report on Dying in America in light of these recommendations about what nursing can and should be.

Yet there are significant barriers:

• Empowerment
• Roles and responsibilities
• Healthcare and organizational culture
• Reimbursement

How can we remove these barriers and empower nurses to lead in promoting healthcare change and widespread access to palliative care for all who need it?

We need to leverage the power of nursing to fully realize the possibilities of providing quality palliative care for all patients and their families.

Join us on Twitter Wednesday night at 9p ET/6p PT to discuss these important issues with host Beth Fahlberg. Use the hashtag #hpm. 


*details are fictional and do not represent actual cases. They are based on a composite of experiences.

Beth Budinger Fahlberg PhD, RN, CHPN is a clinical professor at the University of Wisconsin-Madison School of Nursing. She is a nursing educator, researcher and author interested in palliative care in heart failure and evidence-based innovative teaching and learning approaches. You can find her on Twitter at @bethfahlberg.